Running to stay sane

Tag Archives: ASD

My two and a half year old, Eli, is in the super cute phase of sentence building and thought sharing. I told my husband the other day I wish I could freeze this time, when his voice is so sweet and his face so innocent. Even his bossy demands amuse me, with his stern little toddler mean face expressions and his grumpy arm-folding across his chest. I was trying to recall memories of Haiden when he was this age, and felt guilty that I couldn’t remember what his voice sounded like. But that’s because when he was this age, he didn’t have a voice. Crazy to think that my chatter box, my kid who talks nonstop, who uses a vocabulary far above what kids his age should be using, was once non-verbal.

Little Eli guy

I didn’t realize at the time that Haiden was different. I knew that he had a language delay, but at two years old it wasn’t cause for alarm. When he was three and he still wasn’t able to communicate in full sentences, I knew we had to do something. We enrolled him in a special needs pre-school where he received his first IEP (Individualized Education Plan). His diagnosis at that time was Developmental Delay. Over the course of two years there, he made great improvements in language skills, but still struggled a lot with social, cognitive and behavioral issues.

The first time he was able to answer a question in a full sentence will forever be with me. He was about four at the time. We were driving home and I looked back at him in the rear view mirror and tiredly asked, “What would you like for dinner?” To my surprise he answered: “Chicken nuggets, french fries, Sprite.” (This was a foreshadow for what has become his all-time favorite meal, much to my chagrin.) I was so overjoyed. I choked back the lump in my throat as my eyes filled with tears and I took him straight to Mickey Ds.

The next phase he went through was called Echolalia. Basically he was a skipping record, saying the same word or phrase over and over and over and over. So you can imagine how much fun that was. He also adopted a variety of odd (but characteristic of autism) movements: rocking back and forth, flapping his hand, a lethargic gait when he walked. Little idiosyncrasies that would come and go, get better, get worse. There was nothing I could do about it. They were waves that I just had to ride out every time they swelled and rolled through our lives.

Haiden, three years old

When he was four he started at a new daycare. He never wanted to play with the other kids. I would often pick him up while they were outside on the playground. He was always off by himself, Mayor of HaidenLaLaVille. Other kids would point and whisper. Once a kid asked me, “Are you his mom?”

“Yes,” I replied.

“He’s weird.”

My heart broke when I realized that other kids were starting to notice that there was something off about him. And I couldn’t fault a kid for being brutally honest. My consolation at that time was that Haiden didn’t notice- HE didn’t realize he was different and he certainly didn’t know others thought he was. He had no concept of taking another’s perspective. I was glad that he wore this protective cloak of oblivion and that he didn’t hurt over it the way I did.

Now, at nine years old, I think he realizes a little more that he isn’t quite like his fellow classmates. But I don’t think he cares. I love that he doesn’t try to act a certain way to get people to like him. He’s just very authentically Haiden, and if you don’t like him he just doesn’t give a shit! He has a group of good friends who have known him since kindergarten and they all get along great. As long as anyone wants to listen to him chat non-stop about his most recent obsession (last year it was Legos. Now it’s Minecraft) then he’s just happy as can be.

Today my son was named a Shining Star aka Student of the Month at his school. I imagine this would be a pretty huge deal for any parent, but as a special needs mom, I am downright ELATED. I worry about him just making it through the daily routine, so to see him accomplish and achieve anything beyond that is extra exciting. Fourth grade is turning out to be the best school year yet, and I attribute much of Haiden’s success to his teacher.

Haiden has been at the same school since kindergarten. He has had an IEP in place every year, and for the most part the faculty has been very accepting and accommodating of his quirky personality. His teachers have been fantastic every year. In kindergarten it was sweet Ms. R. Her name was Rescorla but this was a bit of a tongue twister for the kids so she went by Ms. R. I was finishing my BA when he started and I desperately wanted him to get a coveted spot in the full-day class. In retrospect it was better for him to start only half days. He was still in phases of frequent, frantic outbursts and meltdowns. He spent a lot of time on Ms. R’s lap. She was great at keeping me updated of his progress.

In first grade he had the cutest, nicest teacher, Mrs. Steed. She always had so much patience with him. We worked out a system of keeping track of his behavior. She printed strips of paper that had a row of smiley faces and sad faces. When he did what he was supposed to do he earned the happy faces. If he acted out he would earn a sad face. We thought this was a great plan until he had an epic meltdown the first time she colored in a sad face. Realizing his fragile psyche couldn’t tolerate this negative reinforcement, she immediately changed the tactic. She made all the faces happy and he had daily goals to achieve a certain number. She was awesome.

In second grade he had Mrs. Solipo. Man, all I can say is second grade was a rough year for him. At one point in time he got suspended for threatening another student with a pencil. Ay ay ay. But we worked tirelessly to improve behavior issues. Mrs. Solipo researched and found articles and tried many many things with him. She became like another mom to him, and he adored her. Still does! She has become a true friend and someone I can talk to about any worries and concerns. I feel like she always has Haiden’s back.

And then there was third grade. Mr. Mean. I mean Mr. Mann. When we met him at back-to-school night, lots of red flags popped up. First, Haiden has always loved having female teachers. This dry, wispy, monotone man couldn’t have been further from the sweet, nurturing teachers he had had previously. On the rare occasions I had to interact with him, his voice put ME to sleep and he expected a room of 8-year-olds to stay engaged??

I had assumed he had been informed that he had a special needs ASD kid in class and that he was adequately prepared to deal with this type of student. It became glaringly clear by the end of the first week of school that that was not the case. I received a call from the principal letting me know there had been an “incident.” There was a fire drill– fire drills freak Haiden out, even if he knows they’re coming. He started panicking and yelling. Mr. Mann expected him to just fall in line with the other kids and when he didn’t, he grabbed him by the wrist and dragged him out of the class. In Haiden’s words: “He grabbed me so tight I felt like he was pulling my muscles off the bones.”

I picked Haiden up from school that Friday with the sickest feeling in the pit of my stomach. I started searching for other options. We checked out a Montessori school– too expensive. I called all the local charter schools– they were full. I even looked into homeschooling– it just wasn’t feasible. So we decided to do something we have avoided doing all these years: put him on meds.

His pediatrician called in a prescription for Risperdal, which is an anti-psychotic drug. I picked it up from the pharmacy and dove into the fine print of all the side effects. In one paragraph it stated that it could lead to Tardive Dyskinesia, a disorder resulting in involuntary, repetitive body movements. In this form of dyskinesia, the involuntary movements are tardive, meaning they have a slow or belated onset. It most frequently occurs as the result of long-term or high-dose use of anti-psychotic drugs. When I read that my blood went cold. I turned to my husband and told him we weren’t going to do it. When I told him why, he firmly agreed. His mother struggled with, and ultimately died from, this ugly disorder.

So I gritted my teeth, swallowed the lump of guilt in my throat, and continued to take Haiden to Mr. Mann’s class. Third grade was rough for both of us. I went from being pretty active in his classroom to avoiding it altogether. Teacher appreciation? Fuggetaboutit. I printed some scholarly articles for him, highlighting some of Haiden’s behaviors and ways to handle it. Mr. Mann never read it. His method of measuring my son’s progress was a behavioral chart he would fill out every day. For each subject there was Excellent, Good, Fair and Poor. According to that man, my son was poor in math every day. I learned to take it with a grain of salt and consider the source. It wasn’t that my son wasn’t doing well, it was that his teacher wasn’t.

The silver lining is that these events led to us getting him occupational and behavioral therapy. His official diagnosis at that time was ASD, ADHD and unspecified anxiety disorder. The poor kid was/is trying to balance A LOT of shit in that beautiful mind of his. And without meds. I cringe at the thought if we had started the Risperdal. I hated the idea that these chemicals would alter the inherent make up of my son. Sometimes he can be a weirdo, but he is my funny, sweet, smart, super cute weirdo!

And then TODAY happens. My son was chosen as Student of the Month. When his teacher called his name I think he was surprised and pleased. She said the kindest things about him, and the best part was we could tell she meant it. From the first time we met her, all of my angst from third grade was put to rest. She is like an ASD angel sent from heaven just for Haiden. She takes such great care of him. It’s such a relief to have that weight of worry lifted off of me this year. A couple months ago I had to come chat with her about Haiden’s use of some grown-up words. I walked into the school ready to ground Haiden from Minecraft for life. Mrs. Hunsaker was so kind about everything that I left the meeting feeling proud of my kid. (Not for saying naughty words, but for other things.)

My heart is bursting today. Some days I’ve had heartbreak over this kid, and I’m sure I will in the future. But today my heart is happy. Now I just want a “My kid got Student of the Month” bumper sticker to commemorate it.

Ummm. Hey, Jill. (Is it okay if I call you Jill?) Parenting overwhelms the best of us. You can’t just go throwing your special needs kid off a bridge. Take a break. Read a book. Go for a walk. Talk to a friend. Do some yoga. Go for a run. Have a good cry. Drink a glass of wine. Hell, drink the whole bottle. I have those days, I totally get it. I don’t know, do something, but for crikey’s sake DON’T THROW YOUR SON OFF A BRIDGE.

There are tragic stories all the time about parents killing their kids, and each one is devastatingly heartbreaking to me. But when I hear the ones involving special needs kids I am even more saddened to think of the lives lost. I am a protective mama bear to all of my kids, but I have to admit my Haiden has often needed a little more protection than Mia & Eli. It hurts my heart to think of him being hurt, and I can not even imagine being on the giving end of that.

I am not a spanker. On the few occasions I have lost my patience to the point of hitting one of my kids, I have been so consumed by guilt I could not let it go. Prime example: When Mia was three (she’s almost 19 now, just to give perspective on how long I’ve held onto this) I was a single mom, working full-time and going to school. After a particularly long day, as I was bathing her, she splashed water on the floor, and I lost it. I pulled her up and smacked her naked bum. A welt immediately appeared. But the worst, the absolute worst part, was the look in her innocent tear-filled brown eyes. Those sweet eyes were full of sadness, hurt, and the heartbreaker: fear. I caused that. I decided that night to quit my job as a restaurant manager and find something less stressful, because I knew I could not take pent-up work emotions out on my child.

Last year, we had a bunch of people over to our house. Haiden has a hard time when there’s too much going on, if it’s too noisy, and especially if other kids are messing with his stuff. So it was no surprise to me that he had multiple meltdowns. And usually I can diffuse him pretty quickly, but that day I couldn’t. By the end of the night I was absolutely out of patience. As he was throwing an epic fit, I took him into the bathroom, flailing and screaming. I remember the instant so vividly- as I raised my hand up, right before it made contact with his butt, his eyes flashed that same set of emotions I had seen in Mia’s eyes 16 years ago. Sadness, hurt, fear. But it was too late. I couldn’t take it back. He looked at me, shocked at what had just happened, and then he said something I will never forget, as he sobbed and gasped and fat tears rolled down his cheeks:

“Why? Why would you hit me? Only bullies hit because bullies are mean.”

I choked back tears and pulled him close, hugging him tightly and apologizing profusely. Because he was right. He was telling me exactly what we have always told him. And here I was, The Bully. Worst heartbreak ever. I never want my kids to feel that again.

Haiden has taught me immeasurable patience. And I’ll admit, I am “lucky” that his ASD is on the high functioning end of the spectrum. I can’t imagine if he was non-verbal (although I have days I wish he was. I kid, I kid. But seriously, the kid can talk for days. On high volume. Think megaphone.)

But no matter the circumstances, I can’t imagine hurting my own children. And I’m sad for the kids who end up hurt at the hands of their parents. And I feel sad for parents who are so far gone that they even had this thought process that would lead to the end result of killing their kid.

I’m also lucky that I can run. People ask me how I got into running. They tell me how they hate it and they wish they could love it the way I do. I am lucky that I found my joy in running. I began running in 2008. Haiden was diagnosed with autism in 2009. The timing couldn’t have been better. Maybe in some ways running found me.

So the moral of this story can pretty much be summed up in a quote from “Legally Blonde”:

“Exercise gives you endorphins. Endorphins make you happy. Happy people just don’t shoot their husbands, they just don’t.” Except fill in “Happy people just don’t kill their kids. THEY JUST DON’T.”

I haven’t blogged since Weber State University’s Fall Semester 2012. I feel like I have abandoned an old friend, and am sheepishly attempting to rekindle and save the tattered relationship. Well, hello, blog. A lot has happened in the last two years. I’m pleased we were able to reconnect, although admittedly, I had to reset my password in order to do so. Nice to see you’ve kept things in order here in my absence.

I’ve thought of you a lot. In moments of crisis, when I mentally composed a Facebook status in my head that I knew was way too long. On long runs, when I saw funny things that I wanted to immediately share with the world. In random instances of life that I wanted to capture in story form, like lightning bugs in mason jars.

So here we are. Since we last met, I had Eli. He is now two and a clone of his daddy. Seriously, never in my wildest dreams did I imagine having a blue eyed child. Mia is 18 and in college. COLLEGE. How is one of my babies studying for finals at the same time the other is beginning potty training?? And then there is Haiden. My one and only H-man. He is smart and funny, and the cause of some of my highest highs as well as the lowest lows. He brings me such joy and such stress. He makes me a better mom and person. My sweet ASD kiddo.

“And so it goes, and so it goes. And you’re the only one who knows.”

My intention is for this blog to be a place of sanctuary for my occasional ranting and raving; a place where I can rejoice in the breakthroughs and accomplishments, the successful mommy moments; as well as a place for pity parties every now and then. Because as Dr. Seuss says:

“You won’t lag behind, because you’ll have the speed.
You’ll pass the whole gang and you’ll soon take the lead.
Wherever you fly, you’ll be best of the best.
Wherever you go, you will top all the rest.

Except when you don’t.Because, sometimes, you won’t.”

Because as much as I wish this blog was more Carrie Bradshaw and Sex in the City-ish, it’s just not. I’m a mom, working two jobs, taking care of three kids (four if we’re talking about the hubby), trying to balance it all with a run here and there. I want to make healthy meals for my family every day, but some days it’s pizza or chicken nuggets. And I have to believe there are others out there like me- working hard to be the best they can, but also finding themselves just trying to keep their heads above water from time to time.

So to you moms and dads out there, to kids with special needs or not, I raise my glass to you. Enjoy the blog. 🙂